autism · confessions · Down syndrome

WARNING: Explicit

AHAHAHAA! You know, you don’t say noddy words, but when you saw that my blog post had a warning on it, you still clicked over here. And probably a lot quicker than if it said, “I’m so awesome” or something. You CHOSE to read this. Now you’re accountable.

I think a lot about words. I always have. I like words. Some swears even. I’ve been thinking about what some choose to believe as offensive or hurtful. I’ve been on both sides of that. You know how much I hate the “r” word, but at the same time, I use words that people find offensive a lot. Nothing too serious, like the F-bomb (have you seen my husband? He looks like an F-Dude, but that has a completely different meaning. I’ve got to get a picture of him on here. It’s so delightful it hurts), but I say things like “crap” and “fart” a lot. Other things I didn’t think were terrible until people brought them to my attention (but honestly, there’s no other word as fitting to describe Kanye West than as a D-bag) I think words only carry the weight we ascribe to them. Gestures, too. I would never in a million years say the “f” word to someone, but I’d flip them off. My friends and family, mostly. I don’t think it’s that terrible. With the some anonymous friends of ours, it’s kind of like the world, “aloha”- we use it for both “hello” and “goodbye”.

Anyone from the street would think that was terrible. It kind of is. But it’s all in context. The kids don’t see it (unless they go through our texts) and it’s kept only between the adults. I don’t see having my middle finger raised at someone who knows I raise it in love is such a big deal. Like I said, it goes back to the weight we (or “society”) gives.

I’m getting somewhere with this, I really am. Some words evolve. Much like the “r” word. Back in the day it was used as a way to describe someone of diminished mental capacity. But that word was hijacked and used as an insult, changing the weight it carried to some people. Myself included. For those who don’t have a child with special needs, that weight is different. Some are JUST LIKE the way I am with flipping off my friends. Does it mean that they are worse than I am? Nope. It just means that words have different meanings, and until someone tells them any different, they won’t know the weight that the word carries. It’s like when Carter’s cousin told him about swear words. He came upstairs and asked if “f…” was a bad word. My stomach hit my feet at the sound of my perfect little boy saying such a terrible word. But it wasn’t anything to him because it hadn’t been given meaning (he obviously had blocked out the traumatic McDonalds event of his youth, and I am grateful).

Wow. Way off track today. I’m trying to make a point. In the Down syndrome world, people have VERY strong views on how children with Down syndrome should be called. I get on these boards on Babycenter and one woman had written how she cried for HOURS because the doctor had called her baby a “downs baby”. Apparently they (we?) don’t like that. The rational behind it is that “we” (I guess) want our children to be treated like a child with Down syndrome rather than a child that is ONLY Down syndrome. Does that make any sense? It’s about treating the whole child and not the disability blah blah blah. I really don’t care if you say that Abby is a “downs” baby. Mostly because I know what you mean. I don’t think anyone who calls Abby as “downs” will treat her any worse than someone who uses the politically correct term as “a Down syndrome child”.

They’re trying this movement out in the autism world, too. They want everyone to say that the child “has autism” and not “is autistic” but it’s not really catching on. I think it’s because autism is like a monster you’re fighting with every single day. You’re not so worried about naming it, as you are just trying to keep it from clawing your eyes out. You worry about getting through the day, not what people refer to your child as.

Please don’t take this as me saying that Down syndrome kids are a walk in the park. I’m not sure how they are. Mine’s only five months old. I know that she’s a lot easier than Casey was at five months, but I know that the monsters are going to be quite different with her. We’re dealing with muscle tone and not screaming. Maybe it’s just because autism seems to be a much louder diagnoses than Down syndrome.

Maybe this is all crap and I have no idea what I’m talking about.

5 thoughts on “WARNING: Explicit

  1. I'm a word person, too. I agree that different people react to words (and gestures) differently. I had a non-LDS friend who used to flip me off when I got off a good zinger at her expense. It just made me laugh. I also know Church members who think nothing of using the terms "screw you" and "you suck" which both carry strong, negative connotations to me. I've also considered the fact that while I am all too prone to shout dammit when I'm frustrated at home, I would never dream of doing it at Church, which I pretty much figure makes me a hypocrite. Also, I still struggle with Down Syndrome vs. Down's Syndrome, but classifying Abby is easy: she's an angel child.

  2. I read this yesterday but didn't have time to comment. Loved your first paragraph. I have to say, I think I was hoping for something a little more explicit than what you dished out. 🙂 Along the lines of people talking about kids who have autism or Down syndrome (as opposed to "he's autistic" or "she's a Down's baby"), Chloe was telling me a brief story this morning about a teacher in her class. I didn't recognize the name (she's never mentioned this teacher before), so I said, "Who?" She repeated her name and then said, "She's a helper for so-and-so who has autism." So it must be happening with the younger set, even if it takes adults longer to get their words straight.

  3. I just wanted to say hi. I am on babycenter too, and also have a daughter with Ds. She's 5, so we have been there done the baby stuff. The only thing that has bothered me about comments on babycenter in conversation about Ds, is when people use the term 'suffering' from Ds. Um, my daughter is not suffering. So I will speak up about that, and I don't even read the threads about terminating after a scary NT scan. Dont get me started.

  4. When I read this post, I instantly pictured one of Gram Rose's gifts. Usually they are wrapped in odd packages, not what "normal" people would wrap with. But when you open them, that's when you realize the gem that is contained inside! I think you are right about the name thing and society. It's what we associate with the name that counts. For me, when I think about "Down's" or whatever you want to call it, my heart overflows with love because of my sweet auntie, and now, my sweet niece. Maybe, it's not so much about the name, or the wrapping, but more about the gift inside. (and yeah, yeah, yeah, I totally failed that…but it makes a ton of sense in my heart.)

  5. You're absolutely right,Cool Whip. Abby doesn't suffer. We really don't either.Missy- you really compared Abby to gone of Grandma Rose's presents? Hmmmm….? I get what you mean though.

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